International Journal of Psychology, 2014 DOI: 10.1002/ijop.12085 The family experience of living with a person with amyotrophic lateral sclerosis: A qualitative study Sabrina Cipolletta and Linda Amicucci Department of General Psychology, University of Padua, Italy L iving with a person with amyotrophic lateral sclerosis (ALS) is a complex and dificult experience. Most research involves only the primary caregiver and uses a quantitative approach. The aim of this study was to explore the experience of family members who live with ALS patients until their death. In-depth, semi-structured interviews were conducted with 13 family members of ALS patients now deceased. Transcripts were analysed using interpretative phenomenological analysis. Three main themes were identiied: “Meaning of ALS,” including the peculiarity of ALS and its comparison with other illnesses, the explanation of ALS, emotions, coping strategies, personal change and dificult choices; “Family relationships,” including centripetal vs. centrifugal forces, role changes, ALS as a family disease, ALS as a family solution, openness towards the outside world; and “Healthcare context,” including access to services, information and humanization. One inding was that families of a person with ALS need more supportive interaction and information during the patients’ illness and their end-of-life. This study is an invitation to understand families’ experience and subsequently help them to ind new ways to cope with the situation. Keywords: Amyotrophic lateral sclerosis; Caregiver; End-of-life; Family; Qualitative methods. Amyotrophic lateral sclerosis (ALS) is a neurode- generative disease with a sudden onset, a rapid progression, a proile of complex disabilities and fatal consequences. People with ALS experience progressive muscle weakness, becoming progressively immobile, and develop impaired speech and respiration problems. In the late stages of the disease, progressive paralysis can result in a “locked-in” state in which only residual muscular movement is possible, but awareness usually remains unchanged. Despite an average life expectancy of about 3 years after symptom onset, the progression of the disease is unpredictable, with 10% of patients living more than 10 years (Andrews, 2009). As the disease progresses, ALS patients require assis- tance with mobility, eating, dressing and nursing care; assistance is often provided by a family member, usu- ally the patient’s partner who assumes the role of primary caregiver. Sometimes, this person spends more than 11 hours per day with the patient (Pagnini, 2013), sometimes also taking advantage of paid assistance. Correspondence should be addressed to Sabrina Cipolletta, Dipartimento di psicologia generale, Università degli Studi di Padova, Via Venezia 8, 35131 Padova, Italy. (E-mail: sabrina.cipolletta@unipd.it). This study is part of a larger project, “How life narratives, cognitive reserve and psychological support may inluence patient experience of amyotrophic lateral sclerosis” (CPDA138941), which is supported by a grant from the University of Padua. The authors declare no conlicts of interest with respect to the authorship and/or publication of this article. The progressive nature of the disease accentuates the dependence of the patient upon the primary caregiver, but conclusions drawn from the evidence about the rela- tionship between the caregiver’s psychological status and patient disability are controversial. Some studies have shown that caregiver burden and depression are positively related with ALS patients’ physical disability (Pagnini et al., 2010) and increase over time (Gauthier et al., 2007). In contrast, recent studies have shown a maintenance of, or even an increase in, quality of life (Olsson, Markhede, Strang, & Persson, 2010) and lessening of depression on the part of the caregiver (Rabkin, Albert, Rowland, & Mitsumoto, 2009). Moreover, caregivers who present lower levels of quality of life are not always those who have to look after the most physically or psychologically impaired patients (Lo Coco et al., 2005). Finally, social support, inding positive meaning in caregiving, and the quality of the relationship with the ill partner have signif- icant effects on carers’ adjustment (Atkins, Brown, Leigh, & Goldstein, 2010; Chiò, Gauthier, Calvo, Ghiglione, © 2014 International Union of Psychological Science